EU-Funded Palliative Care Research
The EAPC has been involved in several European Union funded projects relating to palliative care. Below are the details of our involvement:
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Table of Contents
Horizon 2020 Research (2019 – 2023)
A diagnosis of advanced cancer has an impact on the person with the disease as well as the family caregiver. Good psychosocial and educational support can make a big difference and improve the quality of life of both. The DIAdIC international project will provide the needed evidence about the effectiveness of such interventions in different European countries. The DIAdIC project will develop and evaluate two different psychoeducational interventions for the person with cancer and the family caregiver together (i.e. the dyad):
- FOCUS+, a face-to-face intervention provided in the patient-caregiver dyad’s home by a specially trained health care professional
- iFOCUS, a self-administered eHealth tool for patientcaregiver dyads.
Horizon 2020 Research (2019 – 2022)
MyPal: Fostering palliative care of adults and children with cancer through advanced patient reported outcome (PRO) systems is a Horizon 2020 funded project that aims to enhance palliative care for adults and children with cancer (https://mypal-project.eu/). It aspires to empower people with cancer and their caregivers in capturing their symptoms more accurately and enabling more seamless and timely communication of these to their health care providers. MyPal exploits advances in digital health and mobile technology, developing a ‘gamified’ app for children and an ePRO app for adults. The implementation and effectiveness of both interventions will be tested in clinical settings across five European countries with seven partners. These studies will focus on two different patient groups: adults suffering from haematological cancers and children with solid tumours or haematological cancers. The project is due to be completed in June 2022.
You can read more about MyPal through the newsletters, which cover specific aspects of work undertaken by the team during the project. Click here to read the first and subsequent newsletters.
ERASMUS + Research (2020 – 2023)
This three year project aims to improve the quality of higher education in the field of Palliative Care nursing education by:
- producing a report of European common Core Competences Palliative Care,
- developing innovative education ‘tools’ for Palliative Care education and
- training educators in how to work with the European Matrix Palliative Care Core Competences (a toolkit for educators) to introduce these innovative tools into the curriculum.
To reach this aim, Kajaani University of applied science (KAMK, Finland), HOWEST University of applied science (HOWEST, Belgium), the University Transylvania of Brasov (UTBV, Romania), Dr. Piret Paal (Paracelsus Medicinische Privatuniversität, PMU, Austria) and the European Association for Palliative Care (EAPC, Belgium) have joined forces.
Horizon 2020 Research (2019 – 2023)
‘Palliative Sedation’ – The use of proportional palliative sedation for the relief of refractory symptoms” is funded by the European Union Horizon 2020 funding stream and aims to investigate the use of palliative sedation in several European countries. The project will investigate current practices and guidelines, will contain a prospective clinical study about palliative sedation. The project furthermore focuses on the similarities and differences in both the clinical and ethical aspects of practice across Europe and will formulate recommendations for an updated EAPC framework for palliative sedation.
An online learning programme is foreseen together with a policy workshop for further development and implementation. Partners are located in Belgium, the Netherlands, England, Germany, Spain, Italy, Hungary, and Romania
Clinical Aspects of Palliative Sedation in Prospective Studies. A Systematic Review
Maria Arantzamendi, RN, PhD, Alazne Belar, RN, PhD, Sheila Payne, RN, PhD, Maaike Rijpstra, MSc, Nancy Preston, RN, PhD, Johan Menten, MD, PhD, Michael Van der Elst, MSc, Lukas Radbruch, MD, PhD, Jeroen Hasselaar, PhD and Carlos Centeno, MD, PhD Journal of pain and symptom management, 2020-09-19
ERASMUS + Research (2020 – 2022)
The “Research for Palliative Care Clinicians” programme aims to introduce basic research competences to day-to-day practice of palliative care clinicians. Α curriculum will be designed and implemented (pilot phase) which will enable clinicians of all relevant specialties to value the importance of integrating research to clinical practice, to increase their research capacity both in reading/evaluating research and in conducting their own research and thus to improve the quality of the services provided to patients. Dissemination of the result will also be included in the project.
RESPACC is a joint venture of the following Institutions:
FP7 – 7th Framework Programme (2013 – 2018)
The ACTION project studied the effects of the facilitated, structured ACP program Respecting Choices which was adapted to a European context, on the quality of life of patients with advanced lung or colorectal cancer. In a phase III multicentre cluster randomised controlled trial, 23 hospitals in six countries were randomised: in the intervention sites, patients were offered interviews with a trained facilitator, whereas in the control sites, patients received care as usual. Participating patients completed questionnaires at inclusion, and again after 2.5 and 4.5 months. Use of medical care was assessed by checking medical files.
The study’s primary endpoint was patients’ emotional functioning (EORTC-QLQ-C30) at 2.5 months post-inclusion. Secondary endpoints were patients quality of life and symptoms, patients’ evaluation of decision-making processes, quality of end-of-life care and cost-effectiveness of the intervention. A complementary qualitative study was carried out to explore the lived experience of engagement with the ACTION Respecting Choices ACP program from the perspectives of patients, their Personal Representatives (a nominated family or friend) and the facilitators.
The total number of included patients was 1,117. In the intervention group, 396 patients participated in Respecting Choices ACP conversations (90%). The mean number of facilitated conversations per patient was 1.3 and the average time they took was 93 minutes. Facilitators on average delivered 86% of the key elements of the ACP conversation in the correct way.
FP7 = 7th Framework Programme (2007 – 2013)
The Access to Opioid Medication in Europe (ATOME) project engaged a new consortium of academic institutions and public health organizations in working to help European governments identify and remove barriers that prevent people from accessing medicines that could improve end of life care, alleviate debilitating pain and treat heroin dependence.
With funding from the European Commission’s 7th Framework Programme, ten ATOME partners committed to work with their respective country teams, in addition to government officials, public health and medicine experts from within these countries to conduct legislative and policy reviews.
FP6 (2006 – 2010)
Improved treatment of pain, depression and fatigue through translation research (EPCRC).
Pain, depression and fatigue are subjective clinical manifestations of advanced cancer. Control of these symptoms is pivotal for quality of life of millions of palliative care patients. Pain is the most feared symptom for many patients. the prevalence of depression varies from 6-58% in palliative care patients, reflecting lack of standardised calidated methodology for its assessment in these patients.
Cachexia is likely to be the most important contributor to fatigue in palliative care. The plethora of other symptoms, comorbidities and the high age of most palliative patients support the need for evidence based management strategies. To improve management of pain, depression and cachexia in cancer patients it is necessary to provide new knowledge through research in several areas.
The research plan of the EPCRC was based upon questions raised in the clinic, with a focus on cancer palliative care patients.
EAHC (Executive Agency for Health and Consumers)
An international study to define best practices in palliative care in Europe.
Project completed. View project results at https://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-13-275
FP7-HEALTH (2011 – 2015)
The overall aim of the IMPACT project was to develop optimal implementation strategies for using quality indicators to improve the organisation of palliative cancer and dementia care in Europe and to study factors influencing the effectiveness of the strategies. The main research topics were to find optimal strategies for implementing quality indicators to improve the organisation of palliative cancer and dementia care in Europe, and to pilot study the effectiveness of these strategies, as well as factors influencing their effectiveness. This information has been used to build a conceptual implementation model applicable across diverse healthcare settings that allow rigorous assessment of the effectiveness of implementation strategies.
FP7 = 7th Framework Programme (2012 and 2016)
The goal of the EU-funded project INSUP-C (Patient-centered palliative care pathways in advanced cancer and chronic disease) was to optimise palliative care delivery in Europe and predict future healthcare needs. In this context, researchers investigated the current state of palliative care across Europe in order to identify any requirements for promising practice. Project partners considered the kind of palliative care provided by different types of institutions such as hospitals and residence homes, and at home. They collected descriptions of integrated care models in cancer and advanced diseases, and generated systematic reviews with the support of the European Association for Palliative Care (EAPC Onlus) and the World Health Organization (WHO).
Research results showed that palliative care interventions mainly aimed at reducing suffering and less at grief and bereavement care. Scientists concluded that the best practice required positioning palliative care in the chain of care and to arrange a regional contact point. Partners formulated a framework of integrated palliative care models for malignant and non-malignant diseases such as chronic heart failure and chronic obstructive pulmonary disease. This comprised strategies for high-quality, effective and efficient palliative care delivery that alleviates physical and psychological symptoms. Particular emphasis was given to the timing of the intervention as well as the team that delivers the care.
FP7 2008 – 2011
Changing health and demographic profiles across Europe and beyond highlight the emergence of a longer lived and increasingly aged population. Accordingly, the pressure on health care services to meet the need of this ageing population, particularly in end of life care, is a pressing challenge for clinicians and policy makers alike.
OPCARE9 was a 3 year EU FP7 Co-ordination & Support Action grant funded collaborative project to optimise the care of cancer patients in the last day of life. The project was structured using both an inter-professional and international collaborative framework.
FP7 - 7th Framework Programme (Research 2014 – 2019)
PACE – Palliative Care for Older People in care and nursing homes in Europe. The overall aim of the PACE project is to inform and assist policy and decision-makers at national and European levels. Therefore, PACE will develop specific tools and products to assist them in making evidence-based decisions on optimal palliative care delivery in LTCFs. PACE will help to achieve the objectives of the European 2020 Strategy, specifically the European Innovation Partnership on Active and Healthy Ageing. Ultimately, this will lead to optimizing the delivery of palliative care to the large proportion of elderly EU citizens.
Improving Palliative Care in Care Homes for Older People (free MOOC commenced 22nd February 2021)
FP7 (2008 – 2011)
The aim of PRISMA, a collaborating action project funded by the European Commission, was to inform best practice and harmonise research in end-of-life care for cancer patients across Europe through comparison and exchange of approaches and experiences in measurement and research priorities. Accordingly, PRISMA conducted a three-year multidisciplinary programme to advance science and policy and to enhance coordination of cross-national activity within the region of Europe. This was achieved through eight Work package (WP)s delivered between 2008-2011 involving 11 partner organisations across nine countries, focussed on end-of-life across Europe and in particular focused upon: culture, public preferences and priorities of citizens, clinical research methods and priorities, best practice in tool use, routine outcome measurement in practice, long-term care settings, management and coordination, as well as policy development.